Sorting out my brain can be tricky…I do not want to say I am
over worrying about Down syndrome…or overwhelmed about being a mommy to Maddie…as
we have slipped in to our “normal” life…subtle reminders remind me that we are
a tad different then the average family…it is fine…we are all adjusting…our “normal”
consists of 3 week rotations to Denver (8 hrs of driving) for surgery for
Maddie…normal? safe? tolerable? I suppose…it is what it is and there is no end
in sight so it is our new “normal” and something that has to be done…IEP
meetings for a 3 year old…fun? exciting? hopeful? Not really…but it is our “normal”
and something that has to be done…I am not complaining…it is just different
then I imagined it to be…I thought I would feel more inner turmoil…but I do not…I
thought I would be sad and frustrated…but I am not…I am just numb to it…because
some things have to be done…Maddie’s big birthday is coming on Sunday…again I
reflect back…I feel pain, shame, self doubt…am I doing enough for Maddie…would
of, could of, and should of creep into my mind minute by minute…but I am confused
by the peace I find in our “normal” daily life…what has me thrown for a loop is
how I envisioned Maddie when she was born…I never in my wildest dreams thought
she would be who she is…I never expected her to look like she does…I never
thought she would be so ornery and naughty…I never thought she would be a pint
sized bully…I never thought she would not be talking in coherent words….I never
thought she would be so darn animated…Maddie is not the child I thought I would
have…she is better…simply put Maddie is just better…she makes me smile everyday…out
of frustration…out of gratitude…out of reminding me what is really important…and
what is not…Maddie in not making me a better person…she is not making think
life is better because I have Down syndrome in my life…no I am a better person…because
I have a happy healthy family…Down syndrome...has become just an extra chromosome…not our definition of Maddie
Thursday, May 10, 2012
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Maddie is not the child I thought I would have…she is better
ReplyDeleteLOVE THIS
Nice sentiment. Parenting Spencer has not been as huge a task as I thought it might be, but we've also been very lucky so far as far as health complications.
ReplyDeleteYour "normal" life is WONDERFUL!!! Maddie benefits as much from a normal, happy life as she does from therapies, etc. Actually, *more.* Children need to be loved, to have a safe, routine environment that's fun and nurturing. If we make their lives all about chores or therapies, where's the fun in that? That may lead to full-on frustration, refusal, anxiety. There is a balance, and it sounds like you've hit it spot-on. :-)
ReplyDeleteYes, we have a similar kind of feeling about our normal. But, it is a good normal for us...and definitely I agree our children are better than what we thought we would have...actually better than the medical world pictures them to be too, at least I feel. Happy Birthday to that amazing little girl you have!!!!! Rock it out for us...and as Renee always writes in every single birthday card she makes... "eat lots of cake!"
ReplyDeleteSo many things I loved about this post...I love how you have found peace in your new "normal"...I feel like I am in a bit of a place of turmoil right now myself...Reading things like this give me a little more hope.
ReplyDeleteSo sweet. Isn't it nice when things just seem normal or normal for us? I couldn't have predicted what three years of having Luc in my life would have looked like but I'm glad for all of it. The grief, the happiness all of it.
ReplyDeleteGreat post!
ReplyDeleteWell you planned for Italy, and when you arrived in Holland you thought you were in Kosovo. But now that you've looked around you realize that Holland is a good place too. Funny what it takes to make us understand that it is fine to love the imperfect. The truth is that we are all imperfect, especially those who think they are perfect.
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